Walk encourages awareness of Cystic Fibrosis
May 14, 2018
Truette Bryce looks like any other eighth-grader at Carson Valley Middle School. She's active, social and enjoys playing volleyball. She may look like a healthy teenager on the outside, but inside she is suffering from a hidden disease known as Cystic Fibrosis.
Bryce is one of at least five people in the Carson Valley with the disease, said Gardnerville resident Dan Hamer.
The 13-year-old was diagnosed last year after being treated for a wheat allergy.
According to her mom, Abbie Bryce, Truette was put on a gluten free diet and got about 50 percent better, but later came down with pneumonia.
"Lung and stomach issues can often indicate CF," she said. Sure enough, Truette was diagnosed with the disease.
Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time, according to the Cystic Fibrosis Foundation.
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People with CF generally have a defective gene that causes thick, sticky buildup of mucus in the lungs, pancreas and other organs. The mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrition,
It is a very complex disease and the severity of symptoms can differ from person to person and the age of diagnosis is often another differing factor affecting the individual's health and the course of the disease.
Hamer's 7-year-old daughter Elise was diagnosed with the disease at age 2.
"We knew almost right away and are able to treat it," he said. "Others are not always that fortunate."
In Truette's case finding out about the disease has made it a great challenge on her life.
"It's been kind of difficult to adjust, especially finding out later in her life," said Bryce. "She's had it her whole life, but we didn't know."
Elise and Truette continue to have treatment and some days are better than others, but the most difficult part about CF is not being able to meet and connect with someone with the disease.
"We can't really be in the same room as someone who has it because of cross-infection," said Trunette.
According to the Cystic Fibrosis Foundation, people with CF are at greater risk of spreading germs among others with the disease. It is encouraged that CF patients do not come within 6 feet of each other.
"It can be very isolating," said Truette.
"It is a serious disease, but not many people see it that way," added Bryce. "It's hard for people to understand because she looks healthy, but is really not and is typically in a lot of pain."
Truette, Bryce and Hamer want to help change the perception people have of Cystic Fibrosis.
"Every bit of awareness helps," said Hamer.
The trio encourage the community, other Cystic Fibrosis patients, families and friends to walk with them during the Great Strides event May 20 at Mill's Park in Carson City.
Great Strides is the Cystic Fibrosis Foundation's largest national fundraising event with walks in nearly 500 cities nationwide.
Hamer said the goal of the walk is to create awareness and funding for treatment development of Cystic Fibrosis.
"I want to put the word out there and for people to know that CF is a big deal," said Truette.